Our journey in the Autism Spectrum

Posts tagged ‘love’

From the moment we told Molly she was going to have a baby brother or sister she was so excited and was wanting to bond with her new sibling even before he was born, singing and reading to my belly. She even took the news that she was, in fact, going to have a baby brother quite well. When Henry was born she was 7 1/2 years old. She was a wonderful big sister!

She still is a wonderful big sister…but it’s gotten harder. This journey in the Autism Spectrum is not something she signed up for~none of us did! From about the time Henry was 18 months old, Molly and Henry’s bond changed…for Molly, quite often that special bond was just gone. Disappeared. She didn’t understand. As a family we seemed to be in constant crisis mode (along with having added baby sister, Lucy, to the mix right at that time). We were all beyond stressed-out and sleep deprived. For those 2 years before the diagnoses we were five individuals desperately searching for some connection with and understanding from each other. We were seeking calm and peace and trying to find where we all fit in to this new family of five! All this during Molly’s tween years! Can you imagine!?!

Getting Henry’s diagnoses of PDD-NOS and ADHD I think helped Molly understand a little by giving a name and an explanation for Henry’s behaviors. But it didn’t make things easier. That didn’t make her feelings of loss of that connection with her brother go away. Now at 13 years old, she has become quite an advocate for autism awareness; a true autism warrior in her own right. But still I cannot imagine how difficult it must be for her at times.

She understands what autism is and can give a very insightful explanation about this Spectrum better than just about anyone I know. But I see the pain in her eyes when Henry “rejects” her. Screaming at her when all she does is enter the room, calling her names when she just wants to interact with him, hitting her, throwing things or spitting at her…it hurts me too. Learning that Henry does indeed LOVE her and miss her when she is not here, learning to love and connect with him on his terms…that can be extremely difficult for an adult let alone a kid!!! But still she keeps trying and I am ever so thankful for this…her determined spirit to connect with her brother says so much about her character!

This past year has been a particularly difficult time for Molly~ most I believe is just “normal” teenage stuff. But add to that a sibling that she loves and wants to desperately feel she has a relationship with that happens to be on the autism spectrum…well, let’s just say the situation has been painful and many times, explosive. Thankfully, it seems a place she has found some solace and MUCH understanding is with her sibling support group. It has given her a place where she has a sense of real belonging; a place that is just for her where she knows she is understood. (And I think it has also given her an appreciation for just how “high-functioning” her own brother is! It has helped put things into perspective.)

Several months back Molly made a journal for each of her siblings. They periodically work on these books together, just one-on-one, coloring pictures, writing down games and activities that they do together. From time to time through this book she again finds some connection with Henry. A few weeks ago I posted a picture here of Henry and Molly holding marbles. It was a day that was a true oasis in a week of fighting, hurt feelings, slamming doors, and hateful words thrown about between the kids. School was out, camps were over for the summer and quarters were feeling quite close. And we were getting ready to go on a family trip in a couple of days! (Talk about forced bonding! I was dreading this trip with what had been going on between the kids all summer!)

Anyway, on this day Molly tried once more to feel a connection with Henry. He had gone into her room and found her marble collection. (He LOVES marbles, small round beads and rocks). Whether or not Molly had invited him in or he made himself at home there I do not know. (At the time, Lucy and I were having time together in our downstairs family room.) Whatever the circumstance, Molly saw his interest as an opportunity…she pulled out Henry’s journal and they began to play and count and name all the marbles. (A very creative moment to boot!) At first I didn’t notice how quiet things were upstairs. Then occasionally I would here some quiet giggles and talking. This went on for most of the morning!!! I was afraid to go see for myself for fear of “breaking the spell”. Finally after several hours I couldn’t take it anymore and had to go see for myself. When they showed me what they were doing and Henry excitedly listed all the names of every marble and I saw such joy and happiness in BOTH their eyes…my heart swelled!

At this moment I was silently pleading with Molly to understand that this was a moment to hold on too! Grab it and hold it tight!!! Later I tried to say as much to her, but again, understanding and really remembering this is hard for most I think! But it gave me hope and I think it gave Molly hope as well!

We left a few days later on our trip and I do think Molly did take to heart this “teaching moment” about the need to connect with Henry on his terms. We had one of our best family trips ever! Again, Molly was an outstanding big sister and spent A LOT of time interacting her siblings, especially our time spent at Lake Michigan. The dynamics of all our relationships with each other will continue to change (and hopefully grow even closer) frequently as our family continues this journey in the spectrum. I hope Molly will always try to maintain a closeness, a true connection, with her brother~ I know his love for her is always there, even if she doesn’t always see it. I am praying her heart will remember these times and that she knows just how special she is and how proud I am of her!

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Eight years ago today Mr. Rabinowitz made me his Mrs. Rabinowitz and so began our “happily ever after”. We have known each other for eleven years but how we met is for another blog post another day. Today…well, today I wanted to write about my feelings for my husband, but…

I am finding my feelings too big and my words too small. My heart aches for him every moment that we are apart! Butterflies jump into my stomach at the mere thought of him throughout my days.

He is everything to me. He is my friend that I need, my husband and father to our children that I want and he is the soul mate I have craved for all of my life.

Right now. Still and always…my feelings are too big and my words are too small.

Thank you, Grant, for all that you are and all that you inspire and encourage me to be! You are my knight. My happily ever after. My forever.

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Because of my mother I cannot remember a time when I did not want to become a mother myself. And now I have been blessed three times.

Because of my mother I know just how strong women can be and I am stronger for it.

Because of my mother I have learned that mothers are not always perfect and that is okay. Some imperfections are what make a perfect mom.

Because of my mother I learned to take responsibility for my actions as well as the consequences that follow.

Because of my mother I learned how to make pie shells from scratch.

Because of my mother I was given wonderful opportunities to learn from my grandmothers. She allowed them to help shape me too.

Because of my mother I was able to learn and be shaped by her wonderful group of friends~ incredible mothers themselves~who I consider my friends now too.

Because of my mother I know that mothers can also be friends. I hope that someday my own children will consider me their friend as well as their mother.

Because my mother and grandmother I have finally learned that it is true that how a man treats his mother, that is how they will treat you. (And because of that I have the most wonderful husband and a wise and amazing mother-in-law!)

Because of my mother I know to embrace and learn from my mother-in-law and know that she is my own mother now too.

Because of my mother I know how important grandmothers are in our lives and the lives of my children. We are blessed by this.

Because of my mother I learned to always keep learning.

Because of my mother I am who I am; some parts of me like her and some parts of my like my dad.

Because of my mother I learned that I am 100% ME. And that is good.

Because of my mother I want to continue to try to be a better mother to my own children.

Because of my mother I am embracing other wonderful mothers out there, seeking their friendship, their wisdom.

Because of my mother I know it is okay to let these other wonderful people into my childrens lives so that they may learn from them.

Because of my mother the list of things I have learned and that I am ever so grateful for could continue to go on and on…

Because of my mother I know how much I have yet to learn. I know she will continue to teach me.

~Thank you Mom for ALL you have done for me and for all that you continue to do! Thank you for surrounding me with so many different strong and intelligent mothers and letting me learn from them too. This in itself has shown me the strength and confidence and wisdom of your character. You allowed me to have many Moms in my life. But you, YOU ARE MY MOTHER and I love you with all my heart. Always.

When my son says this to me I know he wants to cuddle and give me a hug. He leans toward my cheek and I am not sure if I am going to get a kiss or a raspberry; with either one we both giggle. Henry has an infectious smile and a twinkle in his eyes that only mean trouble!

He knows funny. He teases with the purpose of getting a laugh…or getting away with something. Sometimes it’s both. Sometimes he tries to be sly about it, keeping a blank face, his mouth set in a straight line. But he just can’t control the tiny twitch that reveals his dimple and then he’ll grin and when he can’t hold that back he will give you a full, gorgeous smile.

Henry tells us he loves us, spontaneously, not just as a rote response to us saying it first. But he didn’t for a long time. He couldn’t identify emotions in pictures and certainly not in others or in himself. He has always been one to cuddle but on his terms, of course. Expressing his experiences and emotions are difficult concepts.

I wondered (and worried) whether the concept of feelings, emotions, would be something that Henry would ever understand. Sure, he was slowly learning the appropriate words. But would he, could he learn to really connect on the emotional level with others.

“I love you, Henry.”

“I love you, too.” No real inflection of tone, no sense of feeling behind his words. Just memorization. I learned to accept that and I would take those words into my heart and there I would place feeling into them for him. For me.

Throughout our days I try to show examples of happy faces and sad faces, angry faces, faces that are surprised. I point out these emotions in his favorite TV shows or movie, on my face, on his sister’s face. I try to get him to copy my expression. I encourage him to point to a happy face or sad face.

I have been met with a blank expression. Many more times Henry would just walk away or start talking about something else. There was no interested or even a hint of comprehension of anything outside of himself.

And then one day we were coming home from school and from the back seat I hear Henry say to Lucy, “How was your day, Lucy?” I held my breath wondering if he would just continue to talk through it about whatever he was seeing in his mind but there was quiet. He was waiting for Lucy to answer!

Soon after that, one evening Lucy was crying about something at bedtime and Henry jumped out of his bed to give her a toy. Suddenly he was dancing around making silly faces. He was trying to cheer her up! Is it possible that he was slowly “getting it”?

Another evening, big sister Molly was in tears over some homework. Her voice was raising in frustration and Henry asked,”Molly, what’s wrong? Why are you sad?”

Molly being too upset to talk, I answered for her, “Molly is sad because she is frustrated about her homework.”

Henry turned back to Molly and said, “Molly you should check your options map.” And then he proceeded to list all of the “green-light” options for what you can do when you are mad or frustrated or upset. And still then continued on to SHOW her how to take deep breaths and count! (Score a perfect 10 for ABA!) He was making the connection between feelings and actions.

Some may say that Henry is just learning to memorize the correct response and not really feeling what he is saying. I think that is part of learning about emotions. He is learning to put words with feelings AND feeling into his words. When he spontaneously smiles at me and says, “I love you, Mom.” His tone changes. I no longer have to put my own feelings onto his words. He is doing that all on his own! We are having to prompt him less and less about saying thank you when he receives a gift and when he does say “thank you” there is a tone of sincerity.

Henry does have feelings and he is beginning to understand those feelings. I don’t wonder about him getting this concept any longer. He sometimes has trouble expressing them but I do believe this will come in time. You can see he is trying. He will learn to do this in his own funny, quirky way which may be very different from most of us but I think that is okay. That’s how he rolls.

It may seem funny or odd to have to practice emotions and appropriate emotional responses. For us, our daily lives are filled with practice. Everything is practice. Feelings and emotions are such difficult concepts for most people on the spectrum. Deficits in this particular area is one of the criteria for being on the autism spectrum to begin with! So, we’ll just keep practicing.

Last night as Grant and I were tucking the two little ones in their beds I heard Henry say to Grant, “Happy Valentine’s day, Dad.”

“Happy Valentine’s Day, Henry. I love you.”

“I love you too, Dad. Now you have to tell mommy happy Valentine’s day and give her a hug.”

Grant responded as I watched from Lucy’s bed and wondered how this was going to play out. “Okay, I will”. Grant turned to say goodnight to Lucy and Henry said, “No, now Dad. You have to tell her now and give her a hug and kiss.” He was watching us for practice I guess? Silly little dude.

So, Grant and I turned toward each other and wished each other a happy Valentine’s day. We said “I love you” to each other as we hugged.

“Uh, Dad, you gotta give her a kiss, too!” So we kissed. Both kids were giggling and we proceeded to switch sides of the room so Grant was saying goodnight to Lucy and I went to say goodnight to Henry. He threw his arms around my neck and said,” Happy Valentine’s Day, Mom.”